You don't mention if it's the skin or the bones. If it's the bones, I'd have her calcium and vit D levels checked.
My daughter recently was diagnosed as well. Her levels were not near that high. After the diagnosis, we found a vitamin d deficiency as well. Her level was 11. SHe just turned 13.
It's all muscle pain. No joint or skin involvement.
Thanks to you and beckyinva for responding.